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SPANISH LAW

Ley ELA: What is Spain’s new neurodegenerative disorders law?

Spain's new 'ALS Law' has been expanded to include all other neurodegenerative disorders such as Alzheimer's, Parkinson's and Huntington's. Here's what you need to know.

Published: 29 April 2024 10:24 CEST
Ley ELA: What is Spain's new neurodegenerative disorders law?
More than 1 million people suffer from neurodegenerative disorders in Spain. Photo: Palle Knudsen/Unsplash

What is Spain’s ELA law?

La ley de ELA (ELA law) was initially created for (and named after) people suffering with Amyotrophic Lateral Sclerosis – a degenerative illness that affects around 4000 Spaniards.

The law has seen several iterations in recent months and drafts have been presented by different parties with different alterations and amendments.

It was originally put forward by the centre-right opposition Partido Popular to modify 2006 legislation on Personal Autonomy and Care for dependent persons, and included a specific set of changes for patients diagnosed with ALS, with the underlying aim of speeding up diagnosis and increasing benefits for care.

Why is legislation needed?

In Spain, it is estimated that there are over 1 million people and families affected by a neurodegenerative disease. Due to the characteristics of these disorders and the changing (namely ageing) demographics of Spanish society, their prevalence is increasing. Many struggle to get the appropriate care they need in a timely manner.

The ELA law aims to speed up these processes and better coordinate care between health and social services.

READ ALSO: Older and more diverse: What Spain’s population will be like in 50 years

With regards to ELA specifically, it has long been felt that further legislation was necessary to improve the lives and care of ELA sufferers.

“It is absolutely necessary and humanely essential. We cannot allow people to choose to die every day for economic reasons, when what they really want is to live,” said the Spanish ALS Association in March when previous proposals were put forward.

Why is it back in the news?

Essentially because various parties have put forward drafts and the government coalition of PSOE-Sumar has now made its own proposal, expanding the law beyond ALS suffers to include other neurodegenerative disorders, such as:

  • Alzheimer’s disease and other memory disorders.
  • Ataxia.
  • Huntington’s disease.
  • Parkinson’s disease.
  • Motor neurone disease.
  • Multiple system atrophy.
  • Progressive supranuclear palsy.

What does the government propose?

By expanding the scope of neurodegenerative disorders covered by the law, the Ministry of Social Rights wants to include the more than 1 million people in Spain who suffer from them, and to give them the benefits previously outlined for ALS sufferers.

In broad strokes, this means creating quicker responses so that people who have been diagnosed with neurodegenerative diseases and need care can be assessed and access, in the shortest possible time, the services and benefits available to them.

What will the law actually do?

According to a statement from La Moncloa, one of its main objectives is to “rationalise and reduce procedures as much as possible, to ensure that there is no significant time lag between the process of a disease and the response offered to sufferers by public administrations in all areas.”

The Health Ministry will also update the previous Approach to Amyotrophic Lateral Sclerosis, which dates back to 2017, to incorporate new goals and actions in the care of people with ALS.

Recommendations for the broader Neurodegenerative Diseases Strategy related to prevention, care and research will also be implemented.

It will include a review of the National Health System’s Portfolio of Services, within the Commission on Benefits, Assurance and Funding of the Inter-territorial Council of the National Health System, with regard to neuromuscular diseases, especially in the field of orthoprosthesis.

Coordination between health and social services will be improved, recognising the role of Spain’s regional health services in establishing the necessary coordination procedures so that patients can access multidisciplinary, continuous and “as individualised as possible.”

It will also introduce a benefit (bono social eléctrico) for family’s of neurodegenerative patients that are dependent on a machine connected to the grid.

When will it finally pass?

It’s unclear, despite the fact that most parties in the Spanish Congress are behind the legislation. The final bill should pass fairly easily, however, though it’s unclear when a final vote will actually be held.

Spain’s Minister for Social Rights, Consumer Affairs and Agenda 2030, Pablo Bustinduy, said this week he is “convinced” that it will be passed during this legislature, swearing that his department will do everything in its power “to achieve it” as soon as possible.

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For members

LEARNING SPANISH

Do people in Spain actually use the formal ‘usted’ form anymore?

It was once common in Spain, but nowadays the formal 'usted' (you) form is rarely used besides in some pretty specific situations. So why is the more informal 'tú' form becoming ever more dominant among Spaniards?

Published: 14 May 2024 11:12 CEST

If you live in Spain or spend time here, you’ve probably heard the word tú (you) a fair bit. It’s one of the very first words you learn when learning Spanish, and pretty crucial (obviously).

But you may have also occasionally heard Spanish speakers using the word usted (also meaning you) from time to time too.

It’s far more likely that you hear tú in Spain, but perhaps if you’ve heard a respectful younger Spaniard talking to an elderly neighbour, or their boss on the phone, or even watched something like a political debate or interview on TV, you probably heard usted used.

Similarly, if you have noticed usted being used while out and about in Spain, it could well have been from the large Latino population in Spain, and it’s likely that you heard Colombians, Venezuelans or other Latinos saying it.

READ ALSO: Why Spain has allowed regional languages to be spoken in Congress

Though they do sometimes use it, the use of usted among Spaniards is slightly different, much rarer, and saved for select circumstances.

In fact, it’s becoming so rare in Spain that some feel its usage is dying out completely, if it hasn’t already.

So, what’s going on here?

Usted vs tú

Firstly, let’s start with a definition. According to the Real Academia Española (RAE) usted is a:

“Form which, in the nominative, in the vocative or preceded by a preposition, designates the person addressed by the speaker or writer… [used] generally as a polite, respectful or distancing address.”

Eg) disculpe, ¿sabe usted dónde está el hospital? (excuse me, do you know where the hospital is?)

In understanding the usted form specifically in Castilian Spanish – Spanish spoken in parts of Latin America it can be slightly or very different, depending where you are – that last part of the definition is key: “generally as a polite, respectful or distancing address.”

It’s worth noting that with usted the verbs are conjugated as if they were third-person singular (el as in he or ella as in she), so it’s usted sabe instead of tú sabes. 

Usted is a form used to show respect or seniority: that you understand there’s a hierarchy (in which usted is at the top, so for example when speaking to your boss or someone interviewing you for a job), but also occasionally to mark social distance between two people (because tú could be considered overly friendly in certain situations) and then, finally, it’s also used more generally to show respect in terms of seniority, like when speaking to an elderly person.

Tú vs usted in Spain

Respectfulness is the key word here. In short, if you hear usted used in Spain, it’s probably for a reason.

In Spain, usted is generally only ever used with authority figures, the elderly and in some formal and/or professional settings, but many Spaniards will just skip over it and use the tú form. Tú can be used with everyone else: your friends, partners, neighbours (around your age or younger), siblings, co-workers, kids, and other people you don’t know but are roughly your age or younger.

In fact, in some cases people might actually be offended if you use the usted form because you could be implying that they’re old, a mistake or social faux pas that is somewhat similar to calling a woman señora and then being quickly corrected (usually with a scornful look) that is should be señorita.

In such cases, they may say trátame de tú (treat me as ‘less formal’ you) or me puedes tutear. 

The verb tutear actually means to speak to someone using the more informal tú form. 

The only part of Spain where the plural form of usted – ustedes – is used all the time is the Canary Islands and some parts of southern Andalusia, where locals prefer this form instead of the standard Castillian vosotros (you in plural). That doesn’t mean that they say usted instead of tú in the singular form, this exception only applies to the plural.

Do people actually use the formal usted form anymore in Spain?

Less and less. It’s dying out in Spain, has been for a while, and is now reserved for those rare occasions outlined above. It’s thought by linguistic experts that it began dying out in the 1970s and 1980s.

The use of usted in Castillian Spanish is now very rarely used in casual conversation. In many cases can only be heard in very formal or ceremonial settings, such as in judiciary, the army, or in certain academic culture contexts or events.

In day to day life, usted only really shows up (besides the examples given above) in advertising, something that generally needs to reflect cultural attitudes and keep up with modern day parlance, so now only really uses the usted form in some specific campaigns for financial services or medical products. As such, depending on the context and age of the people involved, you could also hear usted in spoken Spanish in banks and doctors or hospitals.

An article in Spanish newspaper La Vanguardia entitled ‘Usted is dying’ published back in 2012 looked into the disappearance of the formal form in detail. The fact it was published over a decade ago means that, if anything, the trends it discusses have deepened since then and usted is even lesser used than it was then.

“The use of usted has been reserved for very formal campaigns where a kind of protocol respect for the interlocutor is maintained,” Josep Maria Ferrara, founder and creative director of the Paulov advertising agency, told La Vanguardia.

But this was not the case twenty or thirty years ago. A study on the use of tú and usted in advertising at the end of the 1980s showed that the usted form was used for the most part and that only 11 percent of the advertisements analysed used the tú form.

Changing world, changing language?

So, what changed? Secundino Valladares, professor of Anthropology at the Madrid’s Complutense University, says that Spaniards have embraced tú to such an extent “that the phenomenon is now unstoppable; young people, educated in ‘tuteo’ [the use of the tú form] are sweeping to victory with the tú, and as society is dominated by the value of youth… many older people feel flattered if you tú them,” he said.

In Spain in the 1940s and 1950s the usted form was still well established in many parent-child relationships, and in teacher-student relationships until well into the 1970s. But a changing world and progressive, more egalitarian political ideas seems to be partly responsible for the change. Of course, in Spain, this linguistic shift may have something to do with the changing power and interpersonal dynamics of Spanish society as it transitioned from dictatorship to democracy around this time.

Headline by Spanish radio station Cope reads “Speaking to the teacher at school with the usted form must be brought back”.

Sociologist Antonio López pointed to this trend: “The tendency towards a more egalitarian society, towards the loss of hierarchical distances in social relations, means that it does not seem right to establish prior distances and that is why tú is used instead of usted, which for many denotes distance.”

In that sense, the decline in the formal usted form can be understood both in terms of the laid back nature of Castilian Spanish compared with countries in Latin America, but also in terms of language reflecting social change, similarly to how today, in modern day Spain, there is debate over the use of inclusive language and the dominance of the masculine form in Spanish grammar.

READ ALSO: What is Spain’s inclusive language debate and why is it so controversial?

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